RECENT studies and analyses have demonstrated that men with advanced prostate cancer are now living longer than ever. While this is encouraging, managing the disease over a longer period of time may create physical and emotional burdens for both patients and their caregivers.
A new national survey
A recent national survey of advanced prostate cancer patients and caregivers of men with advanced prostate canceriv sheds light on some of the needs, concerns and priorities related to coping with the disease. Astellas Pharma US, Inc. and Medivation, Inc. commissioned the Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey through the research firm Harris Interactive, and sponsored four leading cancer advocacy and education organizations to collaborate on the initiative: the Association of Oncology Social Work (AOSW), CancerCare®, Prostate Health Education Network (PHEN), and Us TOO Prostate Cancer Education and Support Network.
A total of 91 men age 60+ with advanced prostate cancer and 100 caregivers of men with advanced prostate cancer completed the survey.
Patient respondents expressed concern around their ability to continue living their lives fully and about becoming a burden. Sixty-three percent of patients who participated in the survey said they are concerned or very concerned about their ability to continue participating in the activities they enjoy, and 59 percent express this same level of concern around becoming a burden to their family and friends. By comparison, 43 percent of patient respondents have the same level of concern about dying.
Patients who participated in the survey also expressed loneliness and feelings of isolation. Forty-one percent of patient participants said they do not feel like people understand what they are going through in terms of managing and treating their prostate cancer, and 45 percent report they keep silent about their prostate cancer and treatments.
Caregivers who participated in the survey (wives, partners, daughters, sons, etc.) expressed a high degree of stress associated with their roles. Eighty-five percent reported that caring for someone with prostate cancer creates stress/anxiety related to their patient’s well-being, and 73 percent said there are days when they feel overwhelmed caring for someone with advanced prostate cancer. Interestingly, caregivers who participated in the survey are more concerned about helping their loved one cope with the physical and emotional effects of advanced disease than they are about their own physical or emotional health.
“This survey provides valuable, quantitative information about the current experience of a group of patients and caregivers in the United States, and will help us better support them as they cope with the disease over a greater number of years,” said Rosalie Canosa, program division director, CancerCare.
Caregivers also expressed anxiety about their long-term caregiving responsibilities. The average caregiving duration reported by survey participants was nearly five years. Among the caregivers surveyed, 73 percent said they are concerned or very concerned about their ability to continue providing care over a long period of time.
“These findings suggest that patients and caregivers could benefit from more comprehensive support and a forum in which to share their true feelings about the disease,” said Canosa. “We encourage men with advanced prostate cancer and their caregivers to seek support to help them feel heard and understood.”
To access information about the services and resources available from CancerCare or for more information about The Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey, contact CancerCare. North American Precis Syndicate